Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

Abstract

Background Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation. Methods This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in three phases: initial e-PRO intervention, peer mentor enhancement, and standard recruitment protocol. Results Implementation of the e-PRO intervention and peer mentoring enhancement yielded low enrollment rates over the first six months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832). Conclusions This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention prior to scale-up.

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

“…The decision to administer the home and community sections was made in consultation with the EI program, and based on low and variable daycare/preschool enrollment rates among their enrolled families. This approach to decisionmaking about trial design is congruent with a community-engaged research approach [16].…”

“…Participants were family caregivers (n = 149), the end users of the YC-PEM e-PRO, and were recruited from a large, urban, and non-university affiliated EI program. This EI program was reported to serve nearly 1000 families of children 0-3 years of age annually and has reported less provider familiarity with research engagement [16]. During the 18-month data collection period, a total of 776 caregivers were eligible to be invited into this study.…”

“…As EI programs transition to electronic data capture for purposes of accountability and quality improvement [13,14], the implementation of electronic assessment options may be a scalable strategy that EI programs can use to give families options for providing input about their child's EI care [15][16][17]. The Young Children's Participation and Environment Measure (YC-PEM) is an electronic patient-reported outcome (e-PRO) measure that is designed to support FCC by giving caregivers a valid and reliable way to communicate about their child's current participation and areas of participation need, while also allowing EI programs to aggregate these data to examine trends in this patient-important outcome over time [17][18][19][20][21].…”

“…Since university-affiliated EI programs have stronger provider capacity for research engagement, a logical next step for assessing the scalability of implementing the YC-PEM e-PRO assessment across diverse EI programs is to establish its feasibility, value, and acceptability when deployed in larger, non-university affiliated EI programs. In non-university affiliated EI programs, EI providers' lack of routine involvement in research may contribute to disengagement with testing YC-PEM e-PRO implementation, thereby making it a key setting to understand implementation [16]. There is need to establish YC-PEM feasibility when implemented into routine annual evaluations of the child's progress, YC-PEM value for understanding common areas of family need to address in an individualized family service plan, and YC-PEM acceptability from the parent perspective [23].…”

“…There is need to establish YC-PEM feasibility when implemented into routine annual evaluations of the child's progress, YC-PEM value for understanding common areas of family need to address in an individualized family service plan, and YC-PEM acceptability from the parent perspective [23]. This will help to 1) determine whether the implementation of the YC-PEM e-PRO is practical [24], 2) identify further assessment and protocol modifications needed prior to future implementation efforts, and 3) assure individual site preparedness for implementation [24] and further testing of the intervention [16].…”